Monday, March 19, 2012

From DVT to PE

So, while DVTs are painful in their own right, the real fear with DVTs (deep vein thrombosis, see previous post) is that the clots in your legs will break free and travel to your lungs, known as a pulmonary embolism (PE) which, worst case scenario, can result in sudden death.

After being diagnosed with DVT on Wednesday after a mis-diagnosis on Tuesday (again, see previous post), I stayed home from work on Thursday, in part, because I wasn't feeling stellar, although much of the pain was in my leg, which doesn't exactly keep me from working at a computer. But I wanted to keep my leg elevated and this is easier done at home on the couch so I picked up my computer from work and half-heartedly worked from home. By Wednesday night it had become hard to walk normally, as I couldn't extend my heel to the floor. My calf was a tight painful mess, and the painful area had spread quite a bit.

Why I really stayed home from work was that my eyes were puffy from crying, and I didn't want everyone to see me red-eyed at my desk all day. I was still adjusting to the fact that I was probably going to have to back out of worlds and wasn't sure if I'd be fully back to normal. Being put on blood thinners is not usually a short-term solution, and results in at least 6 months of medication, monitoring and taking precaution against things like crashing, which while training, can be part of my daily routine. And it goes far beyond running--having a clotting issue can be a life-changer in terms of hobbies and routine. This wasn't a regular running injury and wasn't something I'd be able to cross-train through.

As I was lounging on the couch on Thursday afternoon I started having chest pains, although it was mild enough that I couldn't decide if it was imaginary, or maybe even heart burn. The signs of PE are chest pain and shortness of breath, and knowing that DVT can result in PE had me a bit paranoid. I woke up early Friday morning with more intense chest pain (enough so that I yelped in pain on at least one occasion). Around 5 a.m. a DC friend texted, and I commented to her that I was laying in bed trying to decide whether or not to head to the ER. The pain wasn't bad, and the ER seemed a bit extreme, but I also knew the sensations weren't normal, and I had just been diagnosed with DVT. I promised my friend I'd go to the ER, but figured I'd wait for my roommate to wake up and run it by him. In the meantime, I washed my hair (because I figured if I was admitted to the hospital I wouldn't get to wash my hair for a few days), did some laundry, started to clean my room, ate a big breakfast, etc. I couldn't decide if the the pain was serious, and at the same time started to worry about getting admitted to the hospital when my room was a disaster from not having unpacked after the previous two trips. What if someone needed to go get clothes from my place and they saw the state of my bedroom?

I sort of knew I needed to go to the ER, but was hesitant to do so, so futzed around forever before committing to going. Jason and Eryn finally started stirring, and when Erny heard my complaints, insisted that she take me. I continued to dry my hair, call my doctor, email work and let them know that I was "probably crazy but stopping by the ER on my way into work," etc, and then drove around looking for parking forever in trying to decide what type of parking I needed--2 hour, all-day, etc. There was no sense of urgency until I walked into the ER and muttered the words "slight chest pain." They had me on my back and coated in stickers in about 30 seconds. I wanted to point out to them that there was no urgency, as it had taken me several hours to get there after the point I had first considered it a good idea. An EKG, chest x-ray, and CT scan later, they determined that I wasn't going anywhere as I had pulmonary embolism, or blood clots hanging out in the outer reaches of my lungs. Because I had multiple clots on both sides of my lungs, they wanted to keep me to monitor things, which I was happy to agree to, as I was petrified about going home and being alone. I wasn't in much pain at this point, and had no idea of how bad it would get over the next 24 hours.

As fast and efficient as the ER was, I was checked into the hospital, and proceeded to wait for about 5 hours before my doctor saw me. In that time I wasn't allowed to eat, and the pain went from about a 3 out of 10 to a 9.9 out of 10. Apparently clots in the lung can be really painful. Breathing hurt, as did any movements like laughing or moving, in general. I eventually got some pain meds ordered (dilaudid and oxycodone) and while I had at first refused the pain meds, after the pain started to build, I was asking for anything they would give me. The pain meds eventually kicked in, and life felt nice and fuzzy and I appreciated the friends that stopped by to cheer me up as I struggled to stay awake.

Life was OK until about 3 a.m. when I woke up in agony. My day nurse and my night nurse had very different pain management strategies, and my night nurse only wanted to administer pain medication after I requested it. This sounds alright on principal, but once I fell asleep, I didn't wake up until it was way too late for the lesser of two evils (oxycodone) and she went straight for the dilaudid, which I really wanted to avoid after I read about it online. The oxycodone had seemed to work better the day before, the issue being you need to take it before pain is at a 10 because it takes 20 minutes or so to kick in. So, as I whimpered in pain, I also tried to negotiate with the nurse to not get me to the point of needing dilaudid. I also remember sobbing and pleading that I not be discharged in the morning.. I was panicking about the thought of going home alone and having one of these painful attacks, that felt like a cross between what I'd expect a heart attack to feel like, and a collapsed lung. Luckily the day nurse came back, and I got back on my happy schedule of oxycodone, but not before I had a hysterical break-down over the IV that wouldn't stop beeping and the fact that I couldn't eat without sounding the IV. Luckily I don't have to interact with those nurses on a daily basis, because they both really saw me at my worst.

I was discharged Sunday and am starting to feel normal again. The chest pain is almost gone and I'm starting to breathe more normally. The pain in my right leg had disappeared during my hospital stay (likely because of the pain meds, but also because some of those clots were probably what dislodged and moved to my lungs) but now just feels kind of heavy and electric. I have no answers for where I'm going at this point in terms of recovery, and am actively looking to replace my initial primary care guy who both mis-read the initial ultrasound, and has provided little guidance on anything. An example being that he just called to cancel tomorrow's appointment, so I've had no follow-up appointment since leaving the hospital (and I didn't see him in the hospital), and he says he doesn't need to see me for another month for an ultrasound, when he had mentioned that I could do screenings every 2 weeks when I last spoke with him. I do know that I'm not supposed to do anything active (according to him) until I have an ultrasound on my calf, so this means he expects me to just hang out and figure out what's going on until he sees me again in a month. Not to mention a thorough explanation of all of that goes along with being on blood thinners, and dosing, etc. I went in for a blood screen this morning, and the dosage of my medication is based on the results of that test, but despite several calls to the office, I still don't know if I need to continue with a shot in the morning or not. With thinners, they work to get your INR levels in your blood (which has to do with clotting) up to between 2 and 3, and it's something that is monitored regularly to make sure that dosing is accurate. I've been on boosters, which they shoot into your stomach, daily since the first morning in the ER, but will get to stop those as soon as I get to where I need to be.

So, a bit of a long post, but that's what I did this weekend. I'm dealing with it better each day and break into tears less frequently and mainly when I'm alone. My poor parents are going to flippin' freak when they get home from a South American cruise on Wednesday to find out what I didn't tell them. Thanks to all of the friends who visited and called and otherwise kept me entertained during a scary weekend. I'm open to any recommendations for good care in Portland, so if you have them, give me a shout.

Find that right Doc Amy,keep searching, never fear the ER. If you have issues, go, don't worry about cleaning your room! We all want to see you back on that start line. Get well girl, good vibes on the way.

Amy, I have occasionally read your blog and discussed your running exploits with my wife, "sea legs girl". As everyone else, we have been very impressed!

So I feel I know you a little, and I hope it's ok to comment on a couple of things:

1. You had a clot while on birth control pills after a trans-atlantic flight. There is no medical mystery here. You'll be fine. You don't need to worry about clotting in pregnancy, being a high risk surgical candidate etc. That may not mean much now, but in a few years your clot will be long forgotten. Had you gotten the clot unprovoked at your age, it would get a whole diagnostic ball rolling and for the rest of your life people would have to consider putting you preventive blood thinners for various reasons. So, again, it may not seem like much now, but it's a huge difference.

2. Your poor primary care doc... My sense from reading your posts was that the initial ultrasound report said superficial clot and then it was revised once the radiologist read it. You can blame your doc for not calling you back, sure, but not for the ultrasound report.

With regards to whether you can exercise, you shouldn't expect him to know the answer. I know Sea Legs has written to you about this; it's not an easy answer. As a hematologist, even after looking at the literature a few nights ago, I still don't know the answer. Intuitively, it makes sense to "take it easy", but there is no good science to support that. If I asked my advisor, who did a PhD in thombosis, she would not know the answer, either, so on some level you have to decide for yourself.

3. If you want to give your next doctor diarrhea, either your (new?) primary care doctor or maybe a hematologist, if you get referred (which you may not, because of the points mentioned above), bring up the Paget-Schroetter syndrome. It's a kind of so-called "effort thrombosis", ie. a DVT that happens in athletes after strenuous exercise. It's not a well-known syndrome and I only know it because a world-class swimmer was admitted to our department with a DVT in her arm. The Paget-Scrhoetter syndrome refers to arm DVT, so that's not what you had, but it's closely related.

Overall, I bet your running actually made you a little more prone to developing a DVT, because of the mild injury to your blood vessels. I still think your OCPs and long plane ride were the main reasons, of course.

Again: you'll be fine and once you are off coumadin, it's all ancient history.

Hang in there Amy! Just now studying this stuff in one of my Ex. Phys. classes; it scared me to read your report. You were not well served by the medical folks; definitely look elsewhere. Best wishes as you recover!!

Hey FB,Thanks for the response--I really appreciate your insight on this. With regards to the ultrasound report, it was always stated correctly in the report. It was mis-communicated from the radiologist to my doctor and back to me, but the report that was done Tuesday afternoon when I had the ultrasound never changed. Maybe when the radiologist called my doc to convey what she was seeing it was incomplete at that stage, and the report was written after the fact. But telling me I'm fine and that I can keep running, because you don't take the time to fully read the report, I see as negligence. To Joe Schmo it may not matter, but I took the news I received from my doc on Tuesday night to mean that I was fine and that I could continue as normal, which meant getting up and running the next morning (and yes, it hurt like hell, so I should have stopped based on pain). He also mentioned that he went in the next morning, saw the full report and thought, "oh crap," but never called me to let me know that the results were different.

Sorry to hear you are laid low I suffered a similar incident last Spring. Did a 21 mile ski on Sunday, hopped on a plane on Mon. bound for Australia. Long leg from LA to Melbourne, felt what I thought was a 'charley-horse', calf cramp. Hobbled about and felt kinda blah for our entire surf-ski adventure in the Indian Ocean. Attributed the blahness to lack of acclimation to extreme heat. Back home after 3 week trip, still kinda sore calf, still kinda blah. Resumed usual running, skiing, biking, etc. Still not quite feeling right - attribute to jet lag. Spring ski with pups only 1/2 mile from trailhead - boom - extreme shortness of breath, intense chest pain. Had to be snowmachined out of the woods to an awaiting ambulance. Multiple PEs with right ventricle occlusions. Five days in the hospital, followed by 6 months of blood thinner - note to self: avoid hospitals if possible. As far as exercising post-PE, I was told to be cautious and listen to my body - especially if it is yelling. One thing to be aware of - blood thinners bind the iron in your blood. I was completely anemic after 6 months and felt horrible. Now better but still not up to where I was - have patience.

Amy, I don't really have much medical advice to add to my husband's comment :). Other than, yeah, find a doctor you feel you can trust and who listens to you. ´

What I want to say is - there is something about you Amy - this inner strength that you use to run amazingly fast over amazingly far distances and this is the strength you need to use now to get yourself healthy. And your running career will not be affected by this. I still think you will be running again very soon. I actually discussed this with Fast Bastard earlier today and neither of us thinks Worlds is out of the question. But you need to keep a positive attitude despite being dealt a huge blow. You didn't deserve it but you WILL get through it.

On a positive note, I did find a new doc and had an appt today. SUCH a difference to talk to someone who you can tell has the lights on and knows what he's talking about. Much of what he said mimics what FB said, but it was good to talk through options/risk, etc. Was like night and day. Had another ultrasound today and hopefully the calf looks as good as it feels.

I read your blog but rarely (never?) comment. It looks like you got some good advice and I don't have anything to add except thanks for keeping us updated, glad to hear you found a better doc and I'm hoping you have a speedy recovery!!!

Oh wow, Amy! This is so scary! I'm so sorry you have been dealing with this. I guess as an athlete I always feel impervious to many health conditions, so this is certainly an eye opener. Glad you have found a doctor you trust - that is huge! Take care of yourself first and worry about the running later. It will still be there.

About Me

I'm a member of the Montrail-Mountain Hardwear Team and a proud, though distant, member of the Virginia Happy Trails Running Club (VHTRC)--truly a class act. I've been running since I was 11, running ultras since late 2006, and look forward to many more years of running. I moved to Portland, Oregon in November 2009 after almost 6 years in DC, and plan to be an Oregonian for life, with maybe a few brief stints around the world thrown in to keep life in balance.